Канал: NationalPKUAlliance

Webinar: Navigating Choppy Waters

Webinar: Navigating Choppy Waters

Learn about the NPKUA Patient Registry

Learn about the NPKUA Patient Registry

NPKUA Voices of Hope

NPKUA Voices of Hope

BioMarin's Pegasus Open House with NPKUA

BioMarin's Pegasus Open House with NPKUA

Kevin A Registry Testimonial 2023

Kevin A Registry Testimonial 2023

Suzanne S Registry Testimonial 2023

Suzanne S Registry Testimonial 2023

Sonja H Registry Testimonial 2023

Sonja H Registry Testimonial 2023

Sonya D Registry Testimonial 2023

Sonya D Registry Testimonial 2023

NPKUA Advocacy Webinar hosted by Lillian Isabella on Tuesday, October 19, 2022

NPKUA Advocacy Webinar hosted by Lillian Isabella on Tuesday, October 19, 2022

NPKUA Patient Registry Genetic Testing Program Webinar

NPKUA Patient Registry Genetic Testing Program Webinar

NPKUA hosted LNAA Webinar with Kirsten Ahring and Kathryn Moseley

NPKUA hosted LNAA Webinar with Kirsten Ahring and Kathryn Moseley

What if you had a flok? A New Whole-Health Approach to Managing IEM

What if you had a flok? A New Whole-Health Approach to Managing IEM

Adult Topic- Emerging from the Pandemic

Adult Topic- Emerging from the Pandemic

Parent Topic - Navigating Choppy Waters

Parent Topic - Navigating Choppy Waters

Adult and Teen Panel Discussion

Adult and Teen Panel Discussion

Teen Topic - Empowered and In Charge Taking the Lead on your Blood Phe Management

Teen Topic - Empowered and In Charge Taking the Lead on your Blood Phe Management

What's New in PKU

What's New in PKU

Panel Discussion with 2021 Funded Researchers

Panel Discussion with 2021 Funded Researchers

Road Maps through Clinical Trials

Road Maps through Clinical Trials

Lifting The Limits for PKU

Lifting The Limits for PKU

Advocacy Update

Advocacy Update

NPKUA Update and Strategic Planning Panel Discussion

NPKUA Update and Strategic Planning Panel Discussion

The PKU Patient Registry: Amplifying the Patient Perspective in PKU Research and Care

The PKU Patient Registry: Amplifying the Patient Perspective in PKU Research and Care

When Can I Test Blood at Home? Home Phe Monitor Panel

When Can I Test Blood at Home? Home Phe Monitor Panel

Rare Disease Clinical Research Network - Bigger Picture

Rare Disease Clinical Research Network - Bigger Picture

Lifting the Limits for PKU - Breaking Boundaries

Lifting the Limits for PKU - Breaking Boundaries

Drs. Harding and Richards - Lifting the Limits for PKU - Breaking Boundaries

Drs. Harding and Richards - Lifting the Limits for PKU - Breaking Boundaries

Lifting the Limits for PKU with Scott Pelley

Lifting the Limits for PKU with Scott Pelley

Sonya D. shares why she participates in the PKU Patient Registry

Sonya D. shares why she participates in the PKU Patient Registry

2021 NPKUA Conference - Welcome and Report on the NPKUA

2021 NPKUA Conference - Welcome and Report on the NPKUA

2021 NPKUA Conference - PKU Chat In A Snap With Q&A

2021 NPKUA Conference - PKU Chat In A Snap With Q&A

2021 NPUA Conference - PKU Patient Registry, Bringing The Patient Voice To PKU Research

2021 NPUA Conference - PKU Patient Registry, Bringing The Patient Voice To PKU Research

2021 NPKUA Conference - Pegvaliase: The Who’s, the How’s and the Now

2021 NPKUA Conference - Pegvaliase: The Who’s, the How’s and the Now

2021 NPKUA Conference - We’ve Got You Covered! Resources for New PKU Families

2021 NPKUA Conference - We’ve Got You Covered! Resources for New PKU Families

2021 NPKUA Conference - Patient Champions Driving Research Forward

2021 NPKUA Conference - Patient Champions Driving Research Forward

2021 NPKUA Conference - Update On Gene Therapy For PKU - Ongoing Clinical Trials...

2021 NPKUA Conference - Update On Gene Therapy For PKU - Ongoing Clinical Trials...

2021 NPKUA Conference - “This is Our Year! Be a Voice for PKU!”

2021 NPKUA Conference - “This is Our Year! Be a Voice for PKU!”

Your participation in the PKU Patient Registry makes a difference!

Your participation in the PKU Patient Registry makes a difference!

What is Gene Therapy?

What is Gene Therapy?

Meet Annie A PATHWAYS Mentor

Meet Annie A PATHWAYS Mentor

PEER Mentoring Program, Meet Lilly

PEER Mentoring Program, Meet Lilly

2021 NPKUA Virtual Mini Conference

2021 NPKUA Virtual Mini Conference

The NPKUA 2021 Virtual Mini-Conference

The NPKUA 2021 Virtual Mini-Conference

NPKUA Funded Research Spotlight: Dr. Erik Koppes

NPKUA Funded Research Spotlight: Dr. Erik Koppes

CNFC Anniversary

CNFC Anniversary

Christine's PKU Story

Christine's PKU Story

Meet Meaghan, PATHWAYS Mentor

Meet Meaghan, PATHWAYS Mentor

Meet Matt, PEER Mentor.

Meet Matt, PEER Mentor.

Let Our Voices Be Heard - Advocacy Webinar

Let Our Voices Be Heard - Advocacy Webinar

PEER Mentoring and PKU PATHWAYS Adult Programs

PEER Mentoring and PKU PATHWAYS Adult Programs

Make Holiday Bark

Make Holiday Bark

Teen and Adult Panel

Teen and Adult Panel

Holiday Foods For PKU

Holiday Foods For PKU

What's New In Medical Foods?

What's New In Medical Foods?

What is the NPKUA's Maternal PKU Mentor Program?

What is the NPKUA's Maternal PKU Mentor Program?

National PKU Alliance (NPKUA)

National PKU Alliance (NPKUA)

Emerging Therapies and Clinical Trials

Emerging Therapies and Clinical Trials

PKU Therapies and Latest Developments on the Horizon

PKU Therapies and Latest Developments on the Horizon

Power-Packed Meals & Cooking Tips for Maximum Nutrition with Lynn Paolella

Power-Packed Meals & Cooking Tips for Maximum Nutrition with Lynn Paolella

PKU Patient Registry 101

PKU Patient Registry 101

Conference Memories Scrapbook

Conference Memories Scrapbook

Virtual PKU Series: NPKUA Funded Research Update

Virtual PKU Series: NPKUA Funded Research Update

NPKUA Mini-Conference 2020

NPKUA Mini-Conference 2020

Virtual PKU Series: Home Phe Monitor Webinar

Virtual PKU Series: Home Phe Monitor Webinar

Virtual PKU Series: PKU Patient Registry Insights

Virtual PKU Series: PKU Patient Registry Insights

Adult PKU Programs: Volunteers Needed

Adult PKU Programs: Volunteers Needed

PKU Treatment Series: Pregnancy & PKU

PKU Treatment Series: Pregnancy & PKU

Virtual PKU Series: Introduction

Virtual PKU Series: Introduction

PKU Treatment Series: Returning To Treatment

PKU Treatment Series: Returning To Treatment

PKU Treatment Series: Transition to Adulthood

PKU Treatment Series: Transition to Adulthood

PKU Treatment Series: PALYNZIQ

PKU Treatment Series: PALYNZIQ

PKU Advocacy Webinar May 2020

PKU Advocacy Webinar May 2020

PKU Treatment Series: KUVAN

PKU Treatment Series: KUVAN

Utah mother of son with PKU works to get Medical Nutrition Equity Act passed

Utah mother of son with PKU works to get Medical Nutrition Equity Act passed

PKU Treatment Series: The Diet

PKU Treatment Series: The Diet

Inborn Metabolic Disorders COVID-19 Survey

Inborn Metabolic Disorders COVID-19 Survey

EHC Gene Therapy - A Patients Perspective

EHC Gene Therapy - A Patients Perspective

Safety and Gene Therapy

Safety and Gene Therapy

How A Clinical Trial Works

How A Clinical Trial Works

Dairy Alternative Low Protein Food Options from Local Grocery Stores

Dairy Alternative Low Protein Food Options from Local Grocery Stores

An Overview of Gene Therapy in PKU

An Overview of Gene Therapy in PKU

Gene Therapy

Gene Therapy

What Are Genes and What Is Gene Therapy?

What Are Genes and What Is Gene Therapy?

Low Protein Snack Options from Local Grocery Stores

Low Protein Snack Options from Local Grocery Stores

PKU Awareness Local Media Outreach Toolkit

PKU Awareness Local Media Outreach Toolkit

Lifting the Limits for PKU - Nashville 4 Year Anniversary

Lifting the Limits for PKU - Nashville 4 Year Anniversary

Lifting The Limits Virginia 2019

Lifting The Limits Virginia 2019

PKU Registry Update 2019

PKU Registry Update 2019

Phenylketonuria (PKU)

Phenylketonuria (PKU)

Rare Across America

Rare Across America

NPKUA Funded Research - Dr. Allen, UNTHSC

NPKUA Funded Research - Dr. Allen, UNTHSC

Happy Mother's Day

Happy Mother's Day

Thank you for supporting NPKUA

Thank you for supporting NPKUA

Lifting the Limits for PKU - Philadelphia 2019

Lifting the Limits for PKU - Philadelphia 2019

We Celebrate You!

We Celebrate You!

Follow National PKU Alliance To Stay Connected

Follow National PKU Alliance To Stay Connected

Dr. Shawn Christ, University of Missouri

Dr. Shawn Christ, University of Missouri

Future of PKU Research

Future of PKU Research

Rare Disease Day 2019

Rare Disease Day 2019

Advocate May 2019 for the Medical Nutrition Equity Act

Advocate May 2019 for the Medical Nutrition Equity Act

Rare In The Square 2019

Rare In The Square 2019

What is Back to Care?

What is Back to Care?

NPKUA and Homology Medicines: Gene Therapy & Gene Editing Webinar

NPKUA and Homology Medicines: Gene Therapy & Gene Editing Webinar

Lifting The Limits for PKU NYC 2018

Lifting The Limits for PKU NYC 2018

Clinical Trials Panel

Clinical Trials Panel

Emerging Terapies

Emerging Terapies

Panel Discussion with NPKUA's Funded Researchers

Panel Discussion with NPKUA's Funded Researchers

PKU Adult and Teen Panel Discussion

PKU Adult and Teen Panel Discussion

Home Phe Monitor Update

Home Phe Monitor Update

PKU Patient Registry Update

PKU Patient Registry Update

The Future of PKU Drug Development

The Future of PKU Drug Development

Global Association for PKU Introduction

Global Association for PKU Introduction

The History of PKU

The History of PKU

2018 NPKUA Conference Welcome and NPKUA Update

2018 NPKUA Conference Welcome and NPKUA Update

NPKUA PKU Patient Registry

NPKUA PKU Patient Registry

NPKUA MNEA Video Short Version

NPKUA MNEA Video Short Version

NPKUA MNEA Video Long Version

NPKUA MNEA Video Long Version

LiftingTheLimits Virginia 2018 HD

LiftingTheLimits Virginia 2018 HD

NPKUA Anniversary 2018

NPKUA Anniversary 2018

NPKUA Anniversary 2018

NPKUA Anniversary 2018

Lifting The Limits For PKU Denver

Lifting The Limits For PKU Denver

PKU Patient Registry with Jean Koch

PKU Patient Registry with Jean Koch

PKU Patient Registry - Female Reproductive and Maternal PKU Surveys Video

PKU Patient Registry - Female Reproductive and Maternal PKU Surveys Video

LiftingTheLimits Virginia 2017

LiftingTheLimits Virginia 2017

PKU Patient Registry - Diet and Treatment Survey

PKU Patient Registry - Diet and Treatment Survey

Lifting The Limits for PKU Buffalo 2017

Lifting The Limits for PKU Buffalo 2017

General Registry Overview

General Registry Overview

PKU Patient Registry First Three Surveys

PKU Patient Registry First Three Surveys

January 2017 Medical Foods Advocacy Webinar

January 2017 Medical Foods Advocacy Webinar

PKU Patient Registry Introduction

PKU Patient Registry Introduction

Pushups4PKU 2016

Pushups4PKU 2016

Lifting The Limits For PKU Seattle

Lifting The Limits For PKU Seattle

Home Phe Monitor Update

Home Phe Monitor Update

QandA

QandA

NPKUA Scientific Advisory Board Update

NPKUA Scientific Advisory Board Update

Trayer Therapeutics

Trayer Therapeutics

Isolation of Human Aminon Epithelial Cells

Isolation of Human Aminon Epithelial Cells

PKU and the Brain

PKU and the Brain

Liberalization of the Dietary Restrictions for PKU Patients

Liberalization of the Dietary Restrictions for PKU Patients

LiftingTheLimitsForPKU

LiftingTheLimitsForPKU

Gene Therapy

Gene Therapy

AGeneticallyModifiedProbioticTreatment

AGeneticallyModifiedProbioticTreatment

Changing PKU Starts With You

Changing PKU Starts With You

PKU Swine Model

PKU Swine Model

Advocating Best PKU Care

Advocating Best PKU Care

Keynote

Keynote

Welcom 2016NPKUAConference

Welcom 2016NPKUAConference

Lifting the Limits Boston 2016

Lifting the Limits Boston 2016

LiftingTheLimits Nashville

LiftingTheLimits Nashville

Tuxes for Tia EVENT

Tuxes for Tia EVENT

Creating Action with Information: The Rare Disease Community Cary Harding, MD - 2012 Conference

Creating Action with Information: The Rare Disease Community Cary Harding, MD - 2012 Conference

GMP, Synthetic Amino Acids and Casein Control Diets on Osteopenia in PKU Mice - 2012 Conference

GMP, Synthetic Amino Acids and Casein Control Diets on Osteopenia in PKU Mice - 2012 Conference

Gene Therapy Dr. Cary Harding, MD - 2012 Conference

Gene Therapy Dr. Cary Harding, MD - 2012 Conference

Latest Findings on PKU and Executive Function: Expert Panel Desiree White, PhD - 2012 Conference

Latest Findings on PKU and Executive Function: Expert Panel Desiree White, PhD - 2012 Conference

Concluding Remarks Richard Michaux 2012 Conference

Concluding Remarks Richard Michaux 2012 Conference

Participating in Clinical Trials Amy Oliver, JD and Julie Kelly - 2012 Conference

Participating in Clinical Trials Amy Oliver, JD and Julie Kelly - 2012 Conference

Welcome and NPKUA Recap Christine S. Brown, MS, NPKUA Executive Director - 2012 Conference

Welcome and NPKUA Recap Christine S. Brown, MS, NPKUA Executive Director - 2012 Conference

Making PKU History by Kevin Alexander

Making PKU History by Kevin Alexander

PKU Susan Waisbren

PKU Susan Waisbren

PKU Ray Stevens

PKU Ray Stevens

PKU Patient Dr Koch

PKU Patient Dr Koch

PKU Kathryn Moseley

PKU Kathryn Moseley

PKU Ira Fox

PKU Ira Fox

PKU History Paddy Guthrie

PKU History Paddy Guthrie

PKU Heather Saavedera

PKU Heather Saavedera

PKU Denise Ney

PKU Denise Ney

PKU Barbara Burton

PKU Barbara Burton

Panel_Q&A.flv

Panel_Q&A.flv

NPKUA Mary Only

NPKUA Mary Only

NPKUA Leadership

NPKUA Leadership

NPKUA President Richard Michaux

NPKUA President Richard Michaux

Keynote

Keynote

Entertainment

Entertainment

Day2 Welcome Christine Brown

Day2 Welcome Christine Brown

Day2_Keynote_JeffLewis.flv

Day2_Keynote_JeffLewis.flv

Day 2 of 2010 NPKUA Conference

Day 2 of 2010 NPKUA Conference

Rani Singh Presentation on Critial Nutrition

Rani Singh Presentation on Critial Nutrition

Closing Remarks of 2010 NPKUA Conference

Closing Remarks of 2010 NPKUA Conference